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Saturday, October 31, 2009

Guilty As Charged

"Gin,

I was wondering if you have any thoughts on guilt and defensiveness and Fibromyalgai. A support group I'm in was talking about this recently and I thought it might be a good blog post for you.

Thirdly... Guilt. Bah! It does seem to go with Fibro like peas go with small chunks of mushy carrots.

But why?

Forget about the pain of Fibro for a moment. Strip away a bunch of the other symptoms that are common as well, such as: Fibro Fog, fatigue, skin sensitivity, sensory sensitivity, and all other secondary conditions. (In my case, Costochondritis and IBS.)

Once you peel away the layers, you're left with depression, mood swings, lack of ambition and energy, and bouts of bawling. It's quite an emotional ride. Then if you add back in everything else that we suffer... OVERLOAD!!

The problem with Fibro is the inability to fathom it. The condition is a total loss of sensory control. We laugh, we cry, we hurt, we're confused, we want to be coddled and told everything will be okay but we don't want to be cuddled or touched in the wrong places. We want people to understand...but we don't want them to say they can understand how we feel. LOL Seems a bit hypocritical, but it is what it is.

As a FibroMate we all usually have several things wrong with us every second of every day. We stand there talking to our friends or family like a normal person while in the background there's a touch of panic going on. "I'm feeling pains in my chest...I don't remember if these pains are like the usual pains I get with Fibro. Is this something new?" Meanwhile we miss half the conversation going on around us or worse, to us. People start to make assumptions about our behavior. They believe us to be self-centered and sometimes we are but only because our pain and suffering makes us think about ourselves all the time! I don't want to think about my pain but.. OW!

Also...

We want to relate to others. "Do you ever feel a stabbing pain in your earlobe," you ask someone. And their response? A strange look and a shrug. "Umm, not really, no."

"Oh," you say lamely, and chalk it up to your Fibro. Sometimes verbally...sometimes met with an eyeroll.

You know, I'm constantly trying to tell Dan what I'm going through even though I know he's probably tired of hearing it because it is important to me that someone out there, without Fibro, believes me when I talk constantly about the different types of pains and emotions and symptoms I have any given day.

I don't sleep very much, I cry at night a lot during stressful times, I wake up with chest pains or a bad knee or any number of aches and pains. Most often, I wake up with a throbbing in the back of my head that tells me I have a 50/50 chance of developing a debilitating, drug-resistant, migraine. And all of this makes me crabby a few times a day before I get hold of myself.

I want someone to recognize all I feel and the constant fight I go through just to get up in the morning, clean, work, take care of my child, exercise, and keep a smile on my face and positive outlook on life. I need someone to pat me on the back and say...good fight today trooper...and not someone who shares my way of life. I want someone who doesn't commiserate with me to say it!

But they don't.

Instead, I get what most FibroMates get, and that is slight recognition as long as I'm feeling good that day.

On the days that I'm feeling 98% pain free and mostly energetic, I'm rewarded with more smiles and more understanding then on the days when I'm at 10% and needing support the most. On those days I become Gin-the-invalid or Gin-the-drama-queen. Not verbally (though many Fibro friends of mine go through some verbal brutality) but with looks and actions.

Sometimes, Dan will sigh at me and turn his head in the same way he does with my daughter when he's lost patience or doesn't believe her. I read into that...

And THAT brings in the guilt.

I feel guilty when I lose a day to Fibro pain. I feel guilty because I try to tell myself that my lack of energy and ambition is in my head and I need to fight it, I need to push harder and not give up.

Then... I feel guilt from outside sources. A look from Dan, a disinterested grunt from my mother. Are these amplified by my self guilt? Conceived by it? Quite possibly, but it is there.

Fibromyalgia is behind the wheel or our emotions. It makes us irrational at times. We feel guilt and then we get mad for feeling it. We tell ourselves that we shouldn't have to feel guilty and our friends and family shouldn't MAKE US feel guilty.

And that brings us to defensiveness.

"If I could make him understand how it feels he would never look at me like that again. He'd never question me when I said I couldn't do something or needed him to get the child off to school. If only I could...make him understand."

One thing I have to remember is how hard it is for ME to comprehend what I'm going through. How can I expect someone outside to make sense of it? But, as I stated earlier, Fibro doesn't make us rational. We want understanding and support and when we don't get it, we fight for it.

What Non-Fibro Mates have to remember is this. Fibro Sufferers are still mostly jeered and accused of making up stories, drawing attention to ourselves, over-embellishing so we can have excuses to be lazy...and this isn't just common people saying this...they're learning it from Doctors! (If all doctors agreed and came out publicly admitting that Fibro exists, the general public would follow suit.)

Due to recent studies, the stigma is slowly... and I mean very slowly...fading. But not fast enough. Still more research is needed to convince many doctors that Fibro isn't a mental disorder. With all of the mental symptoms, it is quite common for Fibro Mates to be treated as "depressed individuals working themselves into feeling pain".

Ugh! Back to frustration. We have to fight just to be believed. "Please.. I feel pain. I need help. I need an explanation...a plan of attack! Give me something!"

But often we don't get anything. We're experimented on. We can't be understood. Can't be sympathized with. Only a few doctors in the world are fighting to understand Fibromyalgia instead of grouping it with other chronic pain diseases and wishing us luck. (And as a side note: In our struggle for just...someone to understand and help, we're the perfect targets for shysters and their BS cure-alls.)

Yes...all sorts of emotions run high with Fibro Patients from depression to guilt to defensiveness to bitterness. We feel it all, and depending on who you ask, we feel it all tenfold.

So there might be times when we feel guilt when no one is guilting us, defensive when no one is accusing us. These feelings are just another perk of Fibro but like all other symptoms...once we can learn to recognize them we can better handle on them.

Let people scoff at us, roll their eyes, disbelieve. We know how we feel and as long as we know we're fighting the good fight every day and not giving up...the rest of the world can bite it! ::grins::

Those are my thoughts...scattered as they are. LOL

As always my friends, I hope you have 98% pain free days that keep your head up and your heart firm in the belief that the future looks bright.

This is such an important post. It tells so much about how the world of a fibromite is affected by this disorder. It's not just our bodies that are affected - the people around us treat us differently because they just can't understand. It's maddening.

Fibro Helper Gin

To clarify, I am not a doctor or nurse or nutritionist. I'm not selling any products or taking any donations. I simply have Fibro and a lot of knowledge gleaned by lots of research. Fibromyalgia is supposedly going to be with me until the day I die, so that is how long I will fight it.

The only rules of Fibro Fight Club are: No one will talk down to others and no one will rant about how much their life sucks. There are plenty of places to have self-pity moments (and we all get them!) but not here.